All of the local authority interviewees believed direct payments had benefits for people with dementia and their carers. Flexibility was highlighted as the main benefit and this was referred to by everyone interviewed in relation to:
• support suited to the personal circumstances of the family
• better responses to fluctuating, as well as increasing, needs of people with dementia
• complementary support to what was already provided by family carers.
“With the best will in the world we are providing people with dementia living in the community with support packages that can only provide care four times a day, with possibly an overnight if they require toileting. But there is still a vulnerable time whereby there is no cover and as people progress they need a lot of supervision and I think direct payments is the route to go down in terms of ensuring the person is safe” Social work staff member
“If we are providing services it is very difficult to get the flexibility that people with dementia really need” Social work staff member
“Flexibility and choice is a big thing, we have our travelling salesman box of services - day care, home care and respite - sometimes they are very relevant, but sometimes they do not fit”
Social work staff member
Additional benefits highlighted by social work staff were:
• Choice and control over how support is provided and the form it takes.
“The person organising support has a hands on role in who is doing what and when”
Social work staff member
• Consistency in the timing of support and also who is providing it.
• Enabling family carers to respond to crisis situations.
“Should a crisis situation arise there is money sitting in an account to use to cover it without
having to call half a dozen people to get permission” Social work staff member
• Using direct payments provided familiarity: it allows the opportunity to employ someone who is known to the person with dementia, and it can also keep the person in familiar surroundings with recognisable things around them.
“Whilst we still remembered bits of things all of us would want to be at home” Social work staff member
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• It can keep people at home who would otherwise be in long term care by
complementing the support provided by family carers; people have continued to have a good quality of life at home.
“I have a client who would not be in the community without it, the direct payment provides
the flexibility to work support around the daughter’s work” Social work staff member
• It can provide enabling support rather than task-focused care.
Benefits of using direct payments - 12 case studies
All 12 case study participants experienced some benefits from using direct payments. Ten highlighted benefits that related to flexibility, choice and control:
• Enabling the main carer to continue working
• Allowing choice over which agency to use or staff to employ
• Doing things that were not available as a directly provided service
• Working around existing support provided by family carers and/or directly-provided or arranged services
• Enabling recipients to choose the timing of support, either at regular times or varied according to the needs of the family carer/s.
• Allowing support to be provided by people known to the person with dementia.
• Enabling the main carer to leave the home and continue to pursue their own interests.
Three of the case study participants felt the direct payment was adding to the quality
of life for the person with dementia; it was supporting the person socially, providing
trips outwith the home and providing the friendship of the employed carer.
In three cases it had enabled the person with dementia to continue to be cared for at
home during the advanced stages of the illness; in another case it had enabled the
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3.5.4 Barriers for people with dementia according to social work staff
Social work staff were asked if they believed any difficulties existed that would preclude a person with dementia getting a direct payment. All 10 felt there were potential barriers. Whilst some of these related directly to people with dementia, many were wider structural issues that applied to all care groups.Capacity and someone to manage the direct payment
Given the progressive nature of dementia there must be an appropriate person to manage the direct payment as the illness progresses. Many of those interviewed acknowledged the issue of people not being able to get a direct payment unless the person with dementia has capacity to consent or the family carer has appropriate legal powers in place.
“I was trying to think would a person with dementia on their own have a direct payment, obviously there is the support agency but you would need an agency that really understood dementia” Social work staff member
“You need to be a particularly strong person to take it on” Social work staff member
In each of the case studies the direct payment was managed by the main carer, either the spouse or son or daughter. In most cases the family carer had power of attorney for the person with dementia; in one instance the spouse had guardianship.
Responsibilities and requirements
“The difficulty we have in older peoples’ services is getting people to actively consider it as an option” Social work staff member
Some highlighted the responsibility and requirements that go along with having a direct payment being daunting for a person to take on, particularly as an employer. People can feel direct
payments are a good idea but choose not to take them up because the requirements are too much.
“It’s a heavy responsibility and stressful; the person who takes it on personalises the responsibility and there can be a lot of stress and anxiety” Social work staff member
In the majority of the case studies, the management of the payment, administration and level of reporting requirements was unproblematic. However, some commented that they believed it would be difficult for those who do not have relevant experiencet. One recipient felt it was overly bureaucratic given the level of payment they received, whilst another found the administration and reporting was a burden on top of everything else going on in their life.
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Staff and potential recipient attitude
“Unless you get the hearts and minds of the social workers on board it is more complicated to put in place” Social work staff member
Positive staff attitude towards direct payments has been shown in previous research to be an important factor44. Some of those interviewed felt the way direct payments were viewed by social work and then presented to people was a potential barrier. The perception of potential recipients as of what it means to have a direct payment was also considered a factor, which some interviewees linked to lack of information.
“How it is sold by social work is an operational issue we need to resolve as local authorities”
Social work staff member
Lack of awareness and promotion
Lack of advertising and promotion was considered by some as a barrier. People are not being told about direct payments until they are being assessed and are then asking for a service. If there was more widely available information people might be prepared before the assessment stage to find out more about it.
More than half of the case studies found out about direct payments by informal means through family or friends.
Financial constraints and existing services
“We have people waiting for home care packages at the moment because we do not have the services available and the budget - people requesting a direct payment would be no different unless their needs were critical” Social work staff member
Budgetary limitations and cost ceilings were considered a significant barrier. In addition money can be tied-up in pre-purchased services and there would be a desire to use this first.
“Budgets are a significant barrier; we have to shut something to free-up money”
Social work staff member
“If someone requires 24 hour care that is outwith our cost limitations” Social work staff member
Level of need and eligibility thresholds
Some social work respondents highlighted that by the time people with dementia qualify for support, given that they have to meet eligibility criteria by having critical or substantial need, the dementia will be more advanced and there is less opportunity to know the person’s own wishes. The family carers will also have been caring for a number of years and may be reluctant to take on the responsibility that goes along with a direct payment.
“With people with dementia the care has been ongoing for years; by the time people are coming to us they are looking for social care and health to take on responsibility”
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Eligibility criteria and threshold for services
Alzheimer Scotland requested a copy of the current operational eligibility criteria and priority thresholds at which services became available from each Scottish local authority. Many local authorities were reviewing their policy in accordance with the recent Scottish Government’s national eligibility criteria for personal and nursing care for older people45. The 13
authorities who did respond had four priority levels and restricted services to the top two priority levels (substantial or critical need); some authorities would provide support to those assessed at the third level if resources allowed. Those in the lowest priority group typically received only advice and information. This is consistent with the practices of the majority of Scottish local authorities as identified in 200846.
Whilst the new national eligibility criteria acknowledge the need to take a preventative approach and that local authorities will want to consider whether the provision of services or
other interventions might help prevent or reduce the risk of an individual’s needs becoming more intensive, it also recognises its implementation presents a challenge to personalisation, early
intervention and prevention47. The criteria are based on four levels of need and risk factors, similar to the eligibility criteria currently in operation in Scottish local authorities, thus indicating the likely continuation of current practice.
Time taken to set-up a direct payment
The length of time taken to set up a direct payment was thought prohibitive by social work staff, as people have an immediate need for support.
“It is a time consuming process, from telling people to negotiating and setting up; taking on staff is a lengthy process and ongoing” Social work staff member
Limitations on choice
A number of interviewees spoke of having limited choice of supplier of services from whom they could purchase services; monopolies existed in some areas, and there were difficulties in finding people to employ in rural areas.
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Difficulties experienced - 12 case studies
Three recipients had experienced no difficulties with their direct payment. Whilst the remainder experienced some problems, in most cases this related to one or two temporary problems.
Difficulties with staff or with agency carers - Three recipients experienced problems with staffing issues. In two instances personal assistants failed to return to work, leaving the family carer with an extended period of uncertainty and unable to make future plans until proper employment law procedures had been followed; this was almost a year in one case. Another family carer felt their position to be unclear because the paid carers were employed by a private sector agency, which they felt restricted their ability to determine how care was delivered.
Lack of information and support - Two recipients experienced significant problems as a result of lack of information and support. They had to be resourceful in finding things out for themselves; in both cases receiving a direct payment required a great deal of persistence and determination.
Level of direct payment insufficient - Two recipients experienced problems with the level of payment; in one instance the hourly rate was significantly lower than the charges made by their agency of choice. In the other case the carer successfully requested a higher rate so that a more experienced paid carer could be provided for the person with dementia.
Two experienced more fundamental difficulties:
Flexibility restricted by social work department - One recipient experienced a significant lack of flexibility from the social work department who tried to be very prescriptive in how the payment should be used. The family carer had to stand their ground in order to arrange personal care in a three hour block each morning, instead of in three one hour blocks throughout the day as the social work department would have provided it directly. The social work department were also rigid about what activities could be carried out during the personal care time, for example objecting to the time being used to take the person with dementia to the GP surgery, as they considered this a cost that should be met by the NHS.
Delays in increasing care package resulted in care home being the only option - For one carer, significant delays in processing the application for an additional direct payment meant that by the time the first payment was received the person with dementia’s needs had increased. The social work department offered no explanation to justify this delay, and the family carer experienced a lack of communication between the three staff members involved in the process of setting up the direct payment. Had the process of putting direct payments in place been smoother, the family carer believes that it might have provided an alternative to the person with dementia moving into a care home.
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3.5.5 What changes would help
Existing research evidence recommends improved information and support for potential recipients, support for frontline social work staff, consistent practices and procedures that focus on flexible care rather than detailed audit of expenditure and clear policy guidance from central government48.
Local authority staff participating in the research made a number of recommendations to improve practice. These related to both structural issues (legislation, funding and guidance) and local authority operational issues.
Structural changes suggested
A middle ground between the recipient of a direct payment having capacity and the necessity for someone to have power of attorney/guardianship.
Consistency with the Independent Living Fund in rules on employing close relativesu.
Reviewing how money is given to health boards so that it can be freed up to be given as a direct payment.
Bridging funding as resources are currently tied up in existing and pre-purchased services.
More realistic guidance to potential recipients - existing guidance was felt to create an unrealistic expectation.
Operational changes suggested
Outcomes focus, stopping looking at support in terms of hours and focussing instead on what
support should be achieving for the individual.
Reducing bureaucracy and making the system more straightforward so that it is not overly
complicated for the recipient and ensuring there is support for the recipient.
More funding and increasing cost ceilings put on care packages so that there is more money to
keep people at home and maintain their care in the community.
Taking a long term view on the cost of care and value for money; for example giving couples extra respite may delay the need for long term care providing a better outcome for the family and the local authority.
“£3,000 per year for respite to enable a person to remain at home can be a good use of money and outcome for the family” Social work staff member
u Independent Living Fund allows for the employment of a close relative providing they do not live in the same house, whereas a
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Centralisation of self-directed support within the social work department, instead of responsibility
lying with care management; one point of contact to advise recipients throughout the process, with hands-on support that could bow out once the arrangements were established.
Work to increase awareness and understanding of direct payments within social work departments and to potential recipients.
“Direct payments have been around for a long time and we have used them for a long time, but it still feels like something new” Social work staff member
“I think it is about local authorities taking more control over how they promote it to people - it has been part of the assessment and review process for many years but I do not think in older people services it has dramatically increased the number of people getting it - we are obviously not doing something right” Social work staff member
What would have helped - 12 case studies
Many of the recipients of direct payments interviewed for the case studies suggested things that would have improved their experience:
Better, more timely information so that people are made aware of their rights,
know who to contact and are aware of the different stages involved in getting a direct payment.
More support with carrying out the reporting requirements of the direct payment. Greater flexibility that allows the recipient full control over the timing of when and
how money is spent, providing it meets the care and support needs of the person with dementia and their family carers.
A system that was quicker to respond so that, as the needs of the person with
dementia intensify, the direct payment can be increased quickly to allow support to be stepped up, enabling the person to continue to live at home.